Tepezza did not help my eye that much. My doctor said it is not a cure by any means but may keep it from getting worse. I had it about 2 years ago. 8 infusions I think. I did lose some hair and nails. It dries everything out. A little nausea at first. I do have leg spasms but also had them before Tepezza. My doc has not suggested I repeat it. We are in the stage of there is not much we can do and my endocrinologist is suggesting I get another opinion. There are not enough doctors that specialize in TED.

thank you for responding. I have decided not to take the tepezza.

I completed the series of 8 Tepezza infusions. I developed tinnitus after the first dose, which continued throughout. I had muscle cramps in my feet and hands, which is something new. These continue today. I often had headaches after. I noticed my taste was off a few days following an infusion. It seems I had a couple other side effects, but don’t remember them at the moment. The steroids were problematic as they disturb my sleep patterns.

My last infusion was mid May. I had my thyroid removed the end of April. The tinnitus is not as bad, but still there. I continue to have muscle cramps/spasms in my hands and feet. My vision has improved, but is still a bit wonky. I was told although I no longer have Graves’ disease as my thyroid was removed, and that it could take six months to a year for the markers of T.E.D. to decrease.

What does this mean? I am happy to have functioning vision again and will follow up with my doctors in a few months. I am grateful for both the Tepezza infusions and the thyroidectomy. I’m still not gaining weight and I believe the levothyroxine still needs to be adjusted. This will resolve in time God willing.

thanks Lori for your input about tepezza. I've decided based on several (4 to be exact) feedbacks about this drug not to take it. plus it bothers me that it hasn't been on the market for long enough to get some solid knowledge about delayed side effects. I'm seeing my Ted eye specialist next week for some suggestions. really do NOT want to have surgery. and I agree - not a lot of ophthalmologists that specialize in TED. Tucson summer weather is not helping with a humidity level of 2 or 3. thanks again for responding. maggie

oh, Julie: so sorry to hear about the diabetes and having to be on a med for that and the reversal of all your initial eye improvements. thanks for your reply. I very much appreciate hearing about your experience.